u/stanthecham

CIPL (small fiber neuropathy)

Wondering if there's a clinical difference between numbness vs pins & needles or tingling vs pain? I basically have all 3 but sometimes one or two symptoms are more prominent than others and trying to determine why.

Is there a scale of severity or does it not work like that?

Is it potentially reversible at certain stages or levels of symptoms vs others?

Thanks for any insight.

Hi hi! I've had my hearing aids for a little over a month and have noticed an increase in tinnitus.

At least I think it's tinnitus. It's not a single tone but more like a faint but persistent buzzing, like a distant, high-pitched, electrical hum. It's not all the time but it is more frequent than before and happens with the HAs in and persists if I remove them.

Audiologist seemed perplexed and said most people report improvement in tinnitus. Referring to the high-pitched single tones, I would agree. So maybe this is something else?

What I'm experiencing happened before the adjustments, so unrelated to boosting the power of the HAs. Has anyone experienced something like this or can tell me what's going on?

Edit typo

If anyone plays Pokemon Go and would like a gift from the X-Files Preservation Collection in Saratoga NY, drop me a friend request!

Please let me know your game name in the comments!

Friend code 880247424035

Edit to add: I've left the building and was able to get cards to most people but not everyone. I will make it back soon though! I honestly didn't expect this response! 😅

Hi - I'm new here. My 4x PhD and many times published literacy professor told me in grad school (in my 30s) that I was dyslexic. I've never otherwise been diagnosed and not sure at this point that it's worth it.

I've always been an excellent speller and avid reader, although I'm a very slow reader and often have to reread passages.

One of my most prominent "symptoms" is that I sometimes say the opposite word of what I mean. This is exacerbated when I'm fighting a migraine, which I have been today. For ex. I might say cold instead of hot, East instead of West, etc. I know the right word and concept pair but what comes out of my mouth is something else.

Sometimes even when I'm singing to a song I know the lyrics to, I might say a word in the same family that rhymes or starts with the same letters as the correct word.

This has been going on for decades.

Are these part of my supposed dyslexia?

Is there a way to correct this? It doesn't bother me, but if it happens around someone who doesn't know this about me, it can make me look kinda dumb when I'm not.

Has anyone benefitted from PT to help manage CIPN? Along with medicinal support.

Every year I struggle to get gifts for my spouse. We mostly buy what we want when we want it (blessed 🙏🏻) and while they do have interests and hobbies, the last thing we need is more stuff. As far as experiences, I have mobility issues so that's tough.

They like music, weightlifting (we have all the weights and equipment and then some), being outside, animals and nature, 80s and 90s retro, and a little bit car culture, astronomy (no room for telescope but has a mono scope), cameras/photography. They don't drink or smoke or play/watch sports.

Thx for any help!

I literally don't recognize myself now that my hair is growing back and it's extra curly and VERY gray. It doesn't look bad. - everyone tells me how good it looks, even people who don't know I had cancer compliment my hair - but I hate it. I hate that I'm not entitled to a single day without being reminded that I had cancer because mirrors exist.

I've said hello to my own reflection out in the wild - TWICE - because I didn't recognize my reflection as myself. The dysmorphia and identity crisis are so fucking real.

Please tell me it gets better.

(IDC++- grade 2, stage 1a. 1year 9 months since diagnosis, 15 months since chemo, have had hysterectomy and on AI.)

Hi friends,

I started on my AI last year with slight osteopenia. One oncologist said to add a calcium supplement, the other wants me to start Zometa.

I have been in the less-than-1% of rare and serious side effects more than once, so the osteonecrosis of the jaw scares the shit out of me. I have a friend who's a dentist who has seen it happen and told me I do not want that.

I already have some pre-existing jaw issues that increase my risk of this side effect.

Of course I want to reduce the risk of bone mets, and I want to help improve or at least slow/stall the progression of the osteopenia, but ONJ truly terrifies me.

This is not helped by getting news that someone I used to work with is now Stage 4 after two cancer-free decades as it has spread to her bones. She is getting a similar med now.

My oncologist said 90% of patients have no serious issues taking it. 10% seems like a decent risk zone for someone like me.

I see my dentist soon and anticipate not getting clearance, but wondering if anyone has opted not to get this injection, or has not gotten clearance, and how that worked out and what you did instead?

Fuuuuuuuuck cancer

ETA: IDC ++- Grade 2, Stage 1a, ki67<5, no lymph spread. Treatment: lumpectomy + bilateral oncologist reduction, 4x TC chemo, 30x radiation, started on Tamoxifen, currently on Letrozole.

Hi friends,

I started on my AI last year with slight osteopenia. One oncologist said to add a calcium supplement, the other wants me to start Zometa.

I have been in the less-than-1% of rare and serious side effects more than once, so the osteonecrosis of the jaw scares the shit out of me. I have a friend who's a dentist who has seen it happen and told me I do not want that.

I already have some pre-existing jaw issues that increase my risk of this side effect.

Of course I want to reduce the risk of bone mets, and I want to help improve or at least slow/stall the progression of the osteopenia, but ONJ truly terrifies me.

This is not helped by getting news that someone I used to work with is now Stage 4 after two cancer-free decades as it has spread to her bones. She is getting a similar med now.

My oncologist said 90% of patients have no serious issues taking it. 10% seems like a decent risk zone for someone like me.

I see my dentist soon and anticipate not getting clearance, but wondering if anyone has opted not to get this injection, or has not gotten clearance, and how that worked out and what you did instead?

Fuuuuuuuuck cancer

ETA: IDC ++- Grade 2, Stage 1a, ki67<5, no lymph spread. Treatment: lumpectomy + bilateral oncologist reduction, 4x TC chemo, 30x radiation, started on Tamoxifen, currently on Letrozole.

For chemo induced neuropathy, I've read that a 1:1 ratio is best. I live in a legal state in the USA and wondering if anyone has had better luck with topical vs tincture vs gummies and if there's a specific strain or product that works well for you?

Hi! I'm about to get my new hearing aids. I read all the pinned posts which were super helpful!

I also searched the sub for Resound and saw a little bit but not a lot.

Wondering if anyone can share their experiences with this brand? The audiologist said it's a patient favorite because of the small size. Thanks for any feedback!

I'm actually excited 😊

Does anyone have a Lamy fountain pen (any model) body, feed and cap in good, usable condition? I'm looking for a home for the cursive nib I have so no damaged body, feed or cap please.

I know I could get a safari cheap but I want to try this route first. Thanks!

Hi hi, I have CIPL (just learned from another post the other day that there's a name for this) and my neuropathy is primarily in my toes and front half of both feet.

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I really like getting out and doing things, but the pain and fatigue have really impacted my stamina for standing and walking and I need to that frequent rest breaks, which isn't always convenient (woods, museums, etc).

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Are there any devices that people have found helpful to balance being able to enjoy life while being able to take breaks and rest your feet?

Hi friends, I have post chemo hair that's growing back and getting wild and unruly. I'd like to maybe go with a low key stylish fauxhawk or even slightly cute mullet but am struggling to find someone who can help.

I watched to try Halie the vegan hairstylist but she's not taking new clients right now.

Who would be my next go to?